Just for Guys!!

guys around a table

We’ve got some exciting news! Have you heard about our newest program initiative, The Guys Discussion Group?

Led by LCSW Dennis Heffern, each month we’ll hear from a different community member on a certain topic with a chance for open discussion at the end.  In this guys-only program, we’ll shoot the breeze with men of all young adult cancer experiences.  Nothing is off the table.  You won’t want to miss it!

The first one starts on August 23rd!  Sign up to be on our email list (more on that below) and we’ll send you the Zoom link when it’s time!  This group is for any guy facing cancer, whether that means patient, survivor, or caregiver.

For more details check out the program page here, and for questions, feel free to reach out to aerial@lacunaloft.org!

Sign up on our program list using the link below, choosing ‘Guys’ Discussion Group’ as one of the programs for which you’d like notifications.  Lacuna Loft will send you an email about a week before the workshop with information on how to join the video chat. ***You’ll need the link that we’ll provide you, a headset with a microphone, and a webcam.***

Click here to sign up to be notified when this program is announced by choosing it under ‘Programs you’re interested in.’ (Feel free to choose to be notified when other programs are announced too!)

Book Club Discussion

It’s officially time for the young adult cancer book club video chat book club discussion!  We’ll be hopping on Zoom, Monday, June 28th at 7 pm ET / 4 pm PT to chat all things The Cancer Journals by Audre Lorde! We’ve been reading your blog submissions and we love how much you have loved this book! Join our online Zoom discussion and chat with us IRL (sorta 🙂 ).

Make sure you’re on the Book Club email list (check your preferences here!) to snag the Zoom link! Questions on how to get on the list? You can reach out to aerial@lacunaloft.org!

Happy reading!

P.S. Want to read along with other participants? Check out reactions from Week 1, Week 2, Week 3.

The Cancer Journals, Week 3!

Welcome to the comments and discussion of the Young Adult Cancer Book Club! We are reading The Cancer Journals by Audre Lorde!  Read our participants’ reactions and follow along with us each week as we read through the book! Caution, spoilers below!

Catch up on Week 1 and Week 2.

Week 3: Chapter 3!

By Christina K.:

Audre Lorde is a woman I have revered for years now for her writing on race. Through The Cancer Journals, I’m encountering Lorde in a new way: as a cancer patient. Her voice as a feminist, activist, and gay Black woman is ever strong and present in this work. Needless to say, she has given me a lot to think about, now over forty years since parts of this book have been published.

In a way only she could, Lorde points out that this practice points to so many broken systems in America. By using a prosthesis, she argues, women are protected from grappling with the post-mastectomy identity (an issue which many of us cancer patients know well.) Even her own surgeon’s office and the women who counseled Lorde in the hospital room post-mastectomy spoke only to the virtues of the use of lamb’s wool and seemed almost offended by her assertion that she did not wish to use it. I cheered her remarks that the prosthesis seemed more for others than for her. I have said in my own life the difficulty of being a cancer patient is that others don’t want to confront their own mortality and so they brush aside my comments about how awful the whole experience is. Over and over again, Lorde asserts that the practice of using this prosthesis undermines the strength of women’s ability to grapple with mortality.

When she wrote that these women also talked about “the bright side of things,” I recognized the toxic positivity I’ve seen as a patient as well. There were so many moments that I noted in my copy of the book going “yes! This!” There are certain truths which never fade about the cancer experience.

But I found myself – gasp – disagreeing with parts of what Lorde says about the detriment of using this prosthesis. Part of Lorde’s argument – that women need to see each other as patients out in the world for a feeling of solidarity and community – is now partially overcome by the internet. Even the most rare of diagnoses (myself included in that group) can now search tags on Instagram and find a group of people who have shared experiences likely similar to mine. But beyond that, I wonder what Lorde considers a necessary line to draw. When my hair was changing during treatment, I wore a wig. Not always for the benefit of others, though not getting looks of pity was pretty lovely, but for my own confidence boost. If we know that there is no going back to a pre-cancer self, then why not choose to make a change which deflects conversation at the grocery store? There is zero judgment to be placed on women who choose to remain without reconstruction or other enhancements to mask the experience of a mastectomy. But in the same way, I feel no judgment should be placed on women who choose reconstruction. Lorde didn’t cast judgment, per say, but she seems to imply that women cannot be self-actualized until they see themselves as changed. The quest for what Lorde calls “accepting her new body,” will happen whether or not she’s taken time between mastectomy and reconstruction.

This selection of The Cancer Journals gave me a ton to think about. I began thinking about what actions I take for myself and what actions are perhaps more performative, more to make others comfortable. And truthfully, I’d like to think that is exactly what Lorde aimed to do: to encourage us to do the work.

By Adrienne G.:

I am surprised at how so much has changed – and not changed – since 1978. In conversations about how to approach my procedure in 2019, I experienced the same insensitive approach to women’s bodies as Audre Lorde, and I was gaslighted by my medical team. When I said, “I’m not sure I want reconstruction,” my oncologist said firmly, “Yes, you do.” My nurse navigator said sweetly and condescendingly, “Oh honey, yes you do.” My plastic surgeon said, “Some women find that decision very empowering, but what you have to realize is that the first thing people will notice about you will be your belly.” And here I was thinking it would be my face.

My decision was not a political one. It was not a middle finger to the patriarchy. I’d already had 2 years of surgeries and chemo infusions, and I was ready to do what I felt was the kindest thing for my body. I also do not wear my breast forms. Not as a statement, but because it’s just too damn hot. I can and do mourn the loss of my breasts. I often am frustrated and unhappy with my appearance and with how clothes fit. But I don’t for a moment regret my decision.

I did almost changed my mind, but fortunately for me, strangers on Instagram were how I found the confidence and validation I needed to make the right choice for me. I think Audre Lorde would have found a community of support, as I did, through social media searching for #flataf, #flattiesunite, #flatfashion, #flatclosurenow. Without this online community, I’m not sure I would have been as strong as she was.

By Xenia R.:

I had no problem reading this entire book and was really taken by it however when it came time to submit my part for the book club, I hit a brick wall.

It was difficult for me to process a book that I felt is the most realistic description of what going through the cancer journey is like, especially for me. I was diagnosed with endometrial/uterine cancer when I was 31 and relapsed at 34. And during that time I felt so alone and as much as my oncologist cared about me, I was going through this process.

Similar to Audra describing her stages of coming to terms with losing her breast and in turn becoming more of a whole person, I feel that having a radical hysterectomy has redefined me and I am more passionate about women having access to mensuration products and the normalization of that entire process, even though I am not going through it.

Audra describes her lack of roles and how isolated she feels, which is something all AYAs can relate to.

As she describes the steps of her breast cancer treatment, surgery, to reconstruction she realizes that everything happens so quickly that there is no time or space for her to exam her true feelings.

A sentence really resonated with me – “I have lived it, and survived it, and wish to share that strength with other women.” This really resonated with me and the advocacy work that I do.

The passion that Audra had for her life and fighting for her voice can be felt in the text.

Then join us on Monday, June 28th to discuss the book with us over Zoom at 7 pm ET/ 4 pm PT! (If you’re signed up here to receive updates about the ‘book club’ then you’ll be sent the Zoom link automatically!)

Excited about the young adult cancer book club? Have any suggestions for future reads? Let us know!

The Cancer Journals, Week 2!

black woman reading book

Welcome to the comments and discussion of the Young Adult Cancer Book Club! We are reading The Cancer Journals by Audre Lorde!  Read our participants’ reactions and follow along with us each week as we read through the book! Caution, spoilers below!

Catch up on Week 1!

Week 2: Chapter 2!

By Megan F.:

This section resonated with me on the topics of intimacy, community, identity, and grief – I loved it all. I immediately highlighted part of a journal entry on page 17: “I’m so tired of all this. I want to be the person I used to be, the real me.”

Lorde discusses the push and pull of identity while having cancer – being the person you want to be and the person others expect you to be. She also discusses how those expectations are different based off her own identity. I especially resonated with the section where she talks about separating herself from decisions she had to make about her treatment and treating them as “intellectual problems.” Most of all, I was surprised with how much of her own experience that I could find pieces to relate to, and how much I learned while reading this.

By Amnol D.:

This was a beautifully written work of literature. It was an interesting read as a blood cancer patient and stem cell recipient, whose hair is the only visible aspect of all I’ve been through. There were aspects of Lourde’s story that were relatable and others that were not. The start of Audre’s experience was very relatable – when you want to be the “old” or “real” you (pg 17). And even as we go through treatment “the familiarity with the procedures had not lessened my terror” reminded me of the slight bit of anxiety I felt before a bone marrow biopsy or the pressure to remain still during a lumbar puncture, even after receiving more than a dozen. Audre’s need for “negative silence” reminded me of the days I didn’t want visitors or said no to visitors because I needed a moment to myself and for my thoughts. They weren’t all necessarily negative but the silence of not having groups of people in your hospital room at once was needed on occasion. I loved having friends to visit but some days I just didn’t have the energy. This connects with Audre’s idea that “first you hurt, then you cry.” It took me months before I had my first real cry, when what I’d been through and was still going through was slowly starting to finally hit me and I couldn’t help feeling the frustration of having to go through the side effects of treatment.

There were two other quotes that I really liked and thought could be relatable to non cancer patients as well. “The world will not stop if I make a mistake” (pg 40). This is something I felt deep as a perfectionist and have learned throughout this journey. Additionally “the fear we may feel to empower” us is something that anyone might see as inspiration.

By Anonymous:

The book The Cancer Journals by Audre Lorde is written with poignant emotion. Her heartfelt reckoning with her cancer journey is relatable to the human condition, as well as my own experiences with cancer. The heartbreaking realities of her condition and mindset were eloquently explained, shedding light on the lived experience of a cancer patient. The writing felt intimate, and honest. I was moved, over and over again by her sincere interpretations of her illness. I would recommend this book to all those who wish to understand chronic illness, hope and strength. The power of her words made me go back and reread, as I tried to let her wisdom soak in. It is a beautifully inspiring book in every way.

By Charlene C.: 

As I’m reading this chapter it’s bring up a lot of my own story with cancer. I, too, am a person of color with a cancer diagnosis. I remember how alone I felt in the beginning and how I wanted someone that looked like me to talk to and share experiences with. It was very isolating to look around and see nobody that looks like you.

As I was reading this chapter it brought me back to the beginning of my journey. I remember the fear and uncertainty that I felt. The millions of conversations that I had with myself about treatment options and the possible outcomes. Think about death for the first time in my life. I find this book well written and it is an easy read.

By Mel B.: 

Some of the journal entries were very relatable going through surgery and treatment. I had breast cancer but did not have a mastectomy so I really couldn’t relate to that.

When I was diagnosed I could totally relate to the 4th paragraph on page 17, “I’m so tired of all of this. I want to be the person I used to be, the real me. I feel sometimes it’s all a dream and surely I’m about to wake up now.” I said this exactly so many times in the beginning all I could think of was this can’t be real.

She spoke about being a black lesbian feminist which I can not relate to. I’m sure it was difficult to deal with this disease in the 70’s with all the racial disparities and inequalities. I’m sure she faced this along her journey. She spoke about feeling alone. I, too, could relate to that. I was diagnosed when I was 33 and none of my friends had ever been through anything like it. I relied mostly on older women and my friends’ moms because they went through it but not at the age I did. So, sometimes I could relate to them but often times not.

Thank god for my family and friends. You quickly find out who your true friends are when you go through something like this. When you think you have the best friends in the world and they are no where to be found when you are going through a situation like this, it’s tough. Time definitely heals. One of my friends once told me “God gives the toughest battles to his strongest soldiers”. My entire experience has definitely made me a much stronger person today.

By Kate B.:

Audre Lorde’s cancer journal entries themselves really resonate with me. So many of her feelings are familiar friends from my experience of this disease: the disbelief, the anger, the grief, as well as feeling “tender in the wrong places.” I am not a breast cancer survivor but Lorde’s fear that she may be “losing her breast in vain…. though it was a price I was willing to pay for life”- was a feeling I struggled to reconcile. Rectal cancer required me to have a life-altering surgery that gave me a permanent colostomy. It was a surgery to prove a negative, and though the pathology showed no evidence of disease following chemo, radiation, and that surgery – I found myself a year later with a metastatic recurrence that is considered chronic.

While like Lorde, I’m “forever reminded of my loss” (of a rectum, in my case) and that I had, and may likely always have, cancer, I also live with a new body part that I hoped would be my lifeline and a get-out-of-cancer card, although it turned out not-exactly to be. I’m struck by how the feelings I’ve experienced are similar though my journey is quite different from Lorde’s. She had one biopsy that doesn’t find cancer, and somehow feels moderately prepared or prescient when her second biopsy shows malignancy. It’s hard for me to imagine having such radical surgery within days of diagnosis. It took me weeks, at least, to figure out a treatment plan… I had a year to contemplate and come to terms with the ostomy surgery.

Finally, I’m super inspired and energized by how Lorde tackles topics of pain and mortality. She claims the “warrior-hood” of fighting cancer and that our pain gives us strength. I love the line: “once we accept the actual existence of our dying, who can ever have power over us again?” Before The Cancer Journals, I hadn’t read any cancer-lit, as it felt too close to home. I’m glad this was the first book I ventured to. It was full of wisdom and inspiration that makes me feel courageous in a new way.

Join in next Monday for the comments and discussion on chapter 3! Then join us on Monday, June 28th to discuss the book with us over Zoom at 7 pm ET/ 4 pm PT! (If you’re signed up here to receive updates about the ‘book club’ then you’ll be sent the Zoom link automatically!)

We will talk about a few chapters each Monday until the book is done. If Monday happens to be a holiday, then the post will publish on Tuesday. Once we finish the book, we’ll use one more Monday to talk about general feelings from the book and anything else you’d like to discuss. We’ll also have a video chat book club discussion at the end! Join in, in the comments every week! Also, there will probably be spoilers so read along with us! Excited about the young adult cancer book club? Have any suggestions for future reads? Let us know!